Jeremy was just 49 years old when CJD ripped him from our lives. Jeremy and I (Jenny) met in high school. He was just 17 and I was 16 years old. We married in April of 1994 after dating for 7 years. In 1995, we welcomed our son, Zachary into our lives, and by 1998, we had our second child, a daughter, Sara. Our family was a wonderful family with lots of love, fun, and laughter. When problems arose, we confronted them as a team. I couldn’t ask for a better partner for me, nor father for my children. When we lost him, we lost the glue that held us together. Things would never be the same for us, with the gaping hole that was left in our hearts. 

 

 

It was the Spring of 2018, that we started noticing that something was amiss with Jeremy’s health. Around March/April, Jeremy began complaining of having memory issues such as constantly losing his phone, his keys, and he even was forgetting the four digit code to the door lock on our house that had been the same code for years. He then began complaining about headaches, eye pain, and balance issues. By the beginning of July, things were getting worse by the day and it was affecting his work. He was a Sheriff’s Deputy part-time, and working full time for a Heating and Air Company as a Sales/Warehouse Manager. His coworkers were becoming increasingly concerned about him and reached out to me. His last day he was able to go into work was July 9, 2018. He was having lots of difficulty with driving a car and was forgetting how to get to work and then back home.

 

Jeremy went to his GP and she scheduled him for an MRI on his brain. In the few weeks before the MRI appointment, his GP also explored sleep apnea as a cause of his issues, and even got him in to a physical therapist to see if there was anything they could determine could be at the root of the problems. We even had his car and our home tested for carbon monoxide levels to see if maybe that was an issue. 

 

After the MRI, we were told that they found lesions in the basal ganglia area of his brain. We then were sent to a neurologist that really did not seem to be too concerned although I was calling several times a week to let him know that his symptoms were worsening by the day. Jeremy was now not understanding conversations, was acting very differently, almost childlike at times, and was falling many times a week, once cracking and knocking out part of his front tooth. After having to become a pain in the neck to the neurologist and his practice, I was finally able to convince him that Jeremy needed a lumbar puncture (spinal tap). Our lives were spiraling as every day there was something else we were noticing and nothing at all we were trying such as vitamins, physical therapy, a sleep study, and a few emergency room visits were improving any of his symptoms. One of the emergency room doctors was helpful in pointing to CJD, Huntington’s Disease, or Lewy Body Disease as possibilities. This is what caused me to advocate so hard for a lumbar puncture with his neurologist.

 

Finally, on August 9, 2018, I got the call from the neurologist.  This was the first time he himself had ever called me back despite the many calls I had made, and messages I left to talk to him. The doctor told me that the results from the lumbar puncture were back and that Jeremy had CJD. I’ll never forget that moment. I was in the Kroger grocery store parking lot waiting for my Click List pickup. I honestly don’t know how I made it home from the parking lot that day. I was devastated, and now had the job of letting Jeremy, our two children, and our family and friends know this devastating news. 

 

From the day that we found out to the day he took his last breath was only 43 days. Our children had to watch as their dad rapidly deteriorated laying in a hospital bed in our home. Sara, our daughter, at this time was 20 years old. She was still living at home and was invaluable in helping with his care. Zach, who was then 23, was a Police Officer in Lexington, Kentucky (100 miles away). and was coming home every weekend and as many times as he could throughout the week to be with his dad and help out in any way he could. Family and friends rallied around us which proved to be such a blessing, and because of some googling that my mom did about the disease, she found the CJD Foundation online and that was such a game changer for us. After reaching out to them, we finally felt like someone was listening to us and willing to help and point us in the right directions. 

 

 

The CJD Foundation was able to help us navigate the rough 7 weeks that we had ahead of us. They told us information and about resources that could help us as we tried to figure out one day at a time what to do to keep Jeremy as comfortable as we could make this impossible situation. They got us in touch with our local Hosparus Foundation and I cannot express enough how greatly this helped us in our darkest hours. As the weeks went on and we knew the end was coming soon, I started looking for funeral homes, just to discover that no funeral home near us was willing to take Jeremy. We were treated very poorly and without dignity by several of our local funeral homes. Once again, we reached out to the CJD Foundation. They stepped in and got us in touch with a funeral home that was knowledgeable about prion diseases and that had kept up with their training on how to deal with prion cases. This funeral home was actually about 8 miles from home and was such a God-send to us. Had we not been informed of them, we would have been forced to have no funeral visitation. Our only option would have been cremation, which went against Jeremy’s wishes. 

 

On September 21, 2018, Jeremy was being taken care of in the Hosparus wing of a local hospital. Our family were all present to say our goodbyes and help him to cross over to the next part of his beautiful life. We were all there as he took his last breath, telling him that we loved him, ensuring him that we would be ok, and that it was all right for him to go and be at peace. That day and those moments are forever etched in our hearts and minds. It was truly the most difficult thing our family has ever had to endure and there is no way we could have handled it as well as we did without the help of the CJD Foundation, Hosparus, family and friends. 

 

Our motivation to share our story is to help shine a spotlight on prion diseases. Prion diseases are rare, so many people, sadly even some health care professionals, know very little about them. So it is so important, the work that the CJD Foundation is doing, to help in the education, the research, and the fund raising areas to find treatments and hopefully one day a cure so that no one’s family ever has to go through what we have.  

 

By sharing our story, we hope to let others know that we understand what they are going through and are here for them. You are not alone. Not only were the professional contacts of finding a funeral home, and Hosparus invaluable, but having someone on the other end of the line who knew what they were talking about, and knew what we were going through, was something that we desperately needed. They were able to give us names of people in our area who had lost loved ones to CJD. We were able to get in touch with them and get tips and advice which proved very reassuring and helpful. 

 

 

Our wish for other families is to reach out to the CJD Foundation and the resources they can get you in touch with as soon as possible. They can be a sounding board for what you are going through and lend a hand to help you get through the obstacles and tough roads ahead. Not only are they are foundation, but more importantly they are real people who understand and can help navigate you at each point in the journey. I would suggest joining social media groups, and becoming involved in the CJD events they hold. I know after we lost Jeremy, it was good to feel like we were taking his memory and paying forward our knowledge to those who were struggling. Just knowing that you are doing good for others, is a big help in the grieving journey.

 

Jeremy’s brother, Kelly Flowers just finished running a marathon in Antarctica. This completed his goal of running a marathon on all 7 continents. He has run for many foundations and charities over the years in his many marathons, but has now set his next goal of running for Jeremy and the CJD Foundation this November in the New York Marathon. He hopes to bring awareness and much needed fundraising to help other families and in bringing much needed funds to those researching and making advancements every day to end prion disease. Please check out Kelly’s story at the link below and consider donating to this worthy cause.